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bbsguru writes "A court settlement has ended a controversial case of medical privacy abuse. From the NYTimes: 'Seven years ago, the Havasupai Indians, who live in the deepest part of the Grand Canyon, issued a 'banishment order' to keep Arizona State University employees from setting foot on their reservation, an ancient punishment for what they regarded as a genetic-era betrayal. Members of the tiny tribe had given DNA samples to university researchers starting in 1990, hoping they might provide genetic clues to the tribe's high rate of diabetes. But members learned their blood samples also had been used to study many other things, including mental illness and theories of the tribe's geographical origins that contradict their traditional stories.'"

There was already fallout from cases like this when it was first discovered in the mid-nineties. I grew up more or less on the Navajo reservation, and remember sitting in on a PTO meeting as a high school student. There was a doctor there who was explaining the diabetes screening that was going to be taking place in the coming months.

She was a Navajo gal who had returned to the res after getting her degree (despite the fact that she could have got a much better job elsewhere), and had managed to secure a government grant to perform free diabetes screening of every native student in the district. I thought this was a great thing given the high rate of diabetes on the res, the low health care coverage, and the importance of detecting diabetes early.

However, one of the school board members, who also held a tribal government post, kept railing on her and accusing her of all kinds of crap, including asking why she hadn't gotten permission from her as a tribal officer first (in fact the doctor had, and even had papers signed by the board member with her). At first I thought it was just because she was a territorial bitch (she was). However, after later hearing about this case, I understood why she was so sensitive to this particular issue, and agreed that her concerns (although not her behavior) were absolutely justified.

Really? The Researchers were given the DNA for the sole purpose of researching the Tribes troubles with Diabetes and then they started doing other things with that DNA that goes outside of what the samples were given for.

Like figuring out whether the diabetes is comorbid with other mental illnesses that might be treatable? Or related to health problems seen among other groups too that may be dealing with them more or maybe less successively than people in the Tribes?

If the studies had really revolved around matters related to the tribe's diabetes problem, then I imagine the university would've raised that argument.

TFA does kinda-sorta imply that the type of study you're talking about is possible in the realm of genetic research, which is all well and good; but nowhere do I see any indication that it's what actually happened. In fact, I'd like to know how they'd go about that since they didn't find a genetic link to the diabetes problem in the first place.

"The problem seems to be that they didn't like what happened later and realized that they hadn't understood what they signed."

Even among native English-speakers, it is not unheard of for a signature to be considered invalid if it's later determined that the signer didn't really know what he/she was signing. This isn't something you'd want to rely on - it's obviously best to know what you're signing before you sign it. But this sounds like it was far removed from the ideal scenario for truly informed consent.

We don't know how the document was explained to the individuals, because we weren't there. No malice would've been necessary for there to be a miscommunication about what was happening; I'd be thoroughly surprised if it had been fully explained and understood.

Given that we don't know exactly what was said, based on the way each side has framed its argument it sure sounds like the Native Americans only intended one use for their blood, the issue was never explicitely discussed, the researchers didn't understand the donors' expectations or the sensitivity to the matter in their culture, and then you get what we have here. If that's true, then the real fault is a serious lapse of judgement on the researchers' part.

Everyone involved may have acted with good faith and good intentions, but if you want to work with other cultures, and trumpet how well you work with other cultures, then you need to be aware of their point of view.

If you read a bit further: Carletta Tilousi, one of the few Havasupai to attend college, stopped by Professor Martin's office one day in 2003, and he invited her to the student's doctoral presentation. Ms. Tilousi understood little of the technical aspect, but what she heard bore no resemblance to the diabetes research she had pictured when she had given her own blood sample years earlier.

I realize that "[t]he consent form was purposely simple, Dr. Markow said, given that English was a second language for many Havasupai," but when you explain it as diabetes research and the consent form says something different, there's a problem. After the above question, the following happened.

The presentation was halted. Dr. Markow and the other members of the doctoral committee asked the student to redact that chapter from his dissertation.

Bottom line is, if they were told it was one purpose, and the contract said something else, then you would have to prove that everyone who signed was capable of understanding that the contract did not match the verbal description. the sentence right before what you quoted was "I went and told people, if they have their blood taken, it would help them," said Floranda Uqualla, 46, whose parents and grandparents suffered from diabetes. "And we might get a cure so that our people won't have to leave our canyon." Does that sound like someone who thought the consent form was more broad than just diabetes?

The investigators treated the Havasupai the same way they treat their own families when they look for a genetic disease.

The Times had another story about a doctor, James Lupski, whose family had the colorfully-named Charcot-Marie-Tooth disease, who got researchers to do DNA studies of his family. http://www.nytimes.com/2010/03/11/health/research/11gene.html [nytimes.com] In sequencing their DNA, they found that there were related conditions in other members of their family who everybody thought were healthy. They got a lot of useful information for that family.

The investigators explained what they were doing to the Havasupai, as best as they could to subjects who don't speak English that well and who don't understand the science of it that well. This is a common situation with well-established rules. As the TFA explains, they got informed consent to do exactly what they did. This was for the benefit of the Havasupai.

The alternative is to never do studies on poorly-educated people. Is that what you want?

There is no such thing as "just studying diabetes." In DNA studies, they try to get all the useful information they can (or can afford), as they did with Lupski. That way they can look for patterns.

Now a few members of the Havasupai want to complain about it (for their own benefit), so they've convinced the other tribal members that there is something wrong with doing standard medical studies on people with a poorly-understood disease. The subjects agreed, and now they're going back on their word. They got away with it because they were in a position to blackmail the university by getting other tribes to boycott their studies.

If you want to say that the doctors also benefitted professionally and got grants for helping their patients deal with life-threatening diseases and potentially saving a few lives, yeah, OK, they did. What's wrong with that? And what about the lawyer who sued the university?

That's just nonsense. The consent form said the samples were to be used for medical research. That's what they were used for. Your examples would be applicable if the samples were used for criminal checks, or market-research, but that's not the case.

In Sony's case, OtherOS was a feature that was present, and in some cases motivated people to purchase the unit. There is no comparison here.

Clauses that say a contract can be unilaterally modified at any time are generally invalid on their face, and since th

Roughly 100 tribe members who gave blood from 1990 to 1994 signed a broad consent that said the research was to “study the causes of behavioral/medical disorders.”
The consent form was purposely simple, Dr. Markow said, given that English was a second language for many Havasupai, and few of the tribe’s 650 members had graduated from high school. They were always given the opportunity to ask questions, she said, and students were also instructed to explain the project and get written and verbal consent from donors.

Those damn researchers, trying to study other diseases and discover our true heritage! How dare they?!

So where do you draw the line? And what kind of signal does this send to other people who are unsure of what their DNA samples will be used for? Regardless of good intentions or the betterment of science, that's a sure fire what to screw up any trust a community might have with you and anyone looking to use DNA analysis.

The line can only be drawn at "no expectation of DNA privacy for anyone". Each of us sheds millions of skin cells every day, everywhere we go, leaving our DNA samples on everything we touch. Anyone who considers their DNA their property should kindly not litter and keep it to themselves. What we should fight is the discrimination based on DNA analysis, because the genotype only describes some initial conditions, whereas the phenotype is what we are, and in many respects, what we've made of ourselves through

The line can only be drawn at "no expectation of DNA privacy for anyone". Each of us sheds millions of skin cells every day, everywhere we go, leaving our DNA samples on everything we touch. Anyone who considers their DNA their property should kindly not litter and keep it to themselves.

I'll be right there with you, just as soon as the laws preventing me from doing whatever I damn well please with the electromagnetic signals broadcast onto my property are repealed.

I, for one, do not care about my DNA being private. But, as you wrote, I might care about an abuse (telling me I can't live in my neighborhood because my DNA says my ancestors once lived in a certain part of the world, etc).

The most abused information -- age, race, gender -- is public. We can't keep it private (in a one-on-one personal encounter) if we wanted. The only solution is to reduce unfair treatment based on that information. Why is that not the same with DNA or other personal information (that has

I agree completely. I like your analogy with skin color: DNA is just as clearly exposed in the world, arguably even more so, but people get fooled into thinking that it is supposed to be private only because they cannot see it with a naked eye.

If they wanted to have expansive use definitions for samples that they voluntarily surrendered, they should have had those terms in writing.

They don't need to make an explicit demand for that, that is something that is actually already assumed. One requirement for conducting research with all human subjects (and especially protected populations) is that they be made fully aware what their data is being used for prior to giving their consent (though some research models require deception and an eventual debriefing this was not the case here).

If you complete your stated analysis on a given set of samples and later desire to do further analysis, then Human Subjects ethical requirements actually put the onus on the Researchers to go back to the Participants and get their explicit permission to continue using their samples.

A major concept in Human Subjects testing is Informed Consent. Researchers are required to fully explain the nature of the study and receive full informed consent from Participants before they can collect any data. This kind of thing is something that HST Researchers (along with their professional organizations and regulatory bodies) take very very seriously.

This depends on their status. Yes, there is Title 45 Part 46 of the CFR, but that only applies to federally-regulated research. Whether this falls into that category or not I am not informed enough to say. Other organizational policy issues are of course between the researchers and their organization.

If you RTFA, you'll see that they did indeed sign a consent form that was "purposely simple" (doctor's words) due to that fact that english is not the Havasupai's primary language. To "study the causes of behavioral/medical disorders." sounds like a boilerplate consent that took advantage of that fact.

What it looks like is that ASU realized they were about to have their a**es handed to them and they backed off and said "ok, we f-ed up, what can we do to make it right?"Had a judge found in the Havasupai's fa

what expectation would I reasonably have that the use would be exclusive?

You mean I should assume that you will go outside our agreement at the first opportunity? If I say "I agree to let you study my blood for X condition", do you really see that as carte blanche?

Let's take this to it's logical extreme. If I get ahold of your DNA through legal means (say, from GP's mom) and set up a restaurant serving cuts of meat from your cloned body, were you "stupid and careless" to not expect such behavior?

Once you are above the karma threshold for mod points, it doesn't matter how your current posts are modded (unless they bring you back below the threshold). What matters is how often you access slashdot, and I think how often you post.

If you want to reduce the amount of modpoints you get... either access & post very frequently or access & post rarely.

Wow, you sure do have a great attitude towards individual rights. how 'bout I take your DNA and:

Put it into a database along with your medical historyUse it to study alcoholism or drug useUse it to study homosexual developmentUse it to study the development of our ancient ancestors from lower life formsPut it into a national/international crime database and run it against all unsolved cases

You may not have a problem with any of these uses, but odds on if I do enough things with your DNA you will object to

I would only object to the 5th use of my DNA, as it violates the 4th Amendment. The rest, have at it.

The basic tenets of your argument are sound however. I realize that while I may be quite free with my limits on DNA use, others may not. The question remains that did these people give informed consent to just diabetes or as a earlier poster claims to a broader collection of genetic disorders. Based on not RTFA, I can only speculate.

It's a tricky situation. I'd love to agree with you in that gaining knowledge is extremely important. But ethically they should have at least asked for permission first. The problem now is that other tribes may be more reluctant to give samples for any reason lest they be abused.

If someone told you they were taking a sample from you for reason X, would you not be angry if they then used it for reasons Y and Z?

If it is "beneficial" (subjective) to you, maybe you would enjoy the "free" service of them utilizing your sample for reasons Y and Z, but if it was merely beneficial to the company that harvested the sample and you were to get no benefit from it?

I might enjoy learning that I have a pre-disposition to a disease and should avoid smoking/drinking/pooping in non-neon shades of to

They didn't do research on them, they did research on their DNA, which the Havasupais provided willingly. Why is it all right for an individual to put usage terms on something they give away but not all right for a company to do it with a product they sell?

So if one day cloning becomes legal and they decide to use a leftover sample of a lab test you had done years ago, you wouldn't get upset that a company now sells copies of you for whatever reason they want? I mean, you did give those samples away in the first place. What does it matter what they do with it after that?

Or, lets get a bit more grounded. Say your blood sample that you had done years ago was now tested and it's proven that you and your family are predisposed to a whole host of diseases. N

The terms in the DNA case were set by the scope of the study which was presented by the researchers and was the foundation of the agreement. Likewise, when you buy the product you know what the limitations are. Neither is a problem. When the company changes the limitations on the product (PS3, made more restrictive for instance) or the scope is expanded after the fact, without obtaining authorization then both are a problem. You see?

Except, as others have pointed out and you would know if you had RTFA, they DID have permission. The Havasupai went to the researchers to cure their diabetes, but in that process they were told, and agreed to, being researched for other disorders.

Now, I can see, in a way, being miffed that research was done that didn't have any hopes of helping the people. (other then giving them knowledge about themselves). And they could ever so slightly argue for some kick-back from that research, but that's a little greedy.

But other then uncovering some inconvenient truths, I'm not seeing the problem. Suck it up and deal with reality. I'm siding with the researchers on this one.

What about this: you give your credit card number to a store for certain purchase, and they purchase dozen of other things on the same credit card for you ("Yes, sir, we truly believe you need all those things, it's all for your own good!")

No, this is more like buying an iPhone and putting Android on it then seeing Steve Jobs get his panies in a bunch over it because you weren't suppose to do that with his idealistic view of the iPhone experience.

They gave away their dna with/or without implicate consent to do something, but the sample no longer belonged to them. All the other analogies I've seen have been, I'm going to ask you for something then continue to affect you by doing other things (additional charges on your credit card, additional

Did I give you the DNA voluntarily without any written terms to limit its use? Then I guess I'm not going to object, because that would only highlight what an irresponsible idiot I am, and how I'm willing to shift that blame for how irresponsible I am on to other people.

if you won't be decent to your fellow man in your relations with them, and instead use the logic that comcast uses when they gouge your bill, then you will reap ill will and you won't be doing any research again

comcast and verizon get away with their gouging because they are abusing an imbalnace of power. you don't benefit from the weasel room you cite above when the footing is between equal entitities

Collecting data for purposes A, then later using them without permission for B, C and D should be illegal. I know that is at least the case here in Norway, the law on use of personal information is quite strict. Consider it a form of fraud if you will, that's the issue here not the research itself.

The tribe members gave blood samples on the condition that they be used for a specific purpose. As interesting as these secondary investigations would have been, their blood belongs to them no one else.

Dang right now dare a Native American tribe be upset when researchers don't honor the agreements they made with the tribe! They should trust that is is for their own good and will help them in the end.Oh and they should just give up their beliefs and and got on with life.Really have they learned nothing from history!

Actually I have to find it a little amusing that they where upset to find out the researchers didn't keep there agreement. I mean really does any tribe really expect that any agreement they sign

it's not like giving you my bike or my car. with physical objects: do whatever you want with them, who cares, the new owner is the 100% owner

but these people are giving their genetic identity to someone else. that's not like the transfer of ownership of a physical object. it's not free and clear of any continuing considerations, because the continued use of their dna has implications and meaning about how they view themselves, how they live their l

Acknowledging a desire to “remedy the wrong that was done,” the university’s Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai

Did not follow that link due to the implied past tense (seven years ago) of the sentence lead-up to it.

The IP rights and ownership of biological materials has been an important intellectual property issue for quite a while. Who owns or should commercially benefit from cell lines and tissue samples has been litigated several times.

What's really troubling about Moore v. Regents is the undisclosed conflict of interest. It was in the physicians' interests to remove his spleen and draw samples because they kept and profited from the cells. If Moore had gone to a different doctor who was just providing him with treatment and not doing research would he have received the same care?

I'm torn here. On the one hand, I would not want research on tissue samples being done outside of the scope of the informed consent permissions document under which the samples were collected. If that did, indeed, occur, the researchers lied to their test subjects. That is all kinds of unethical.

On the other hand, every time I here a "waaah, cry cry, science is being mean to my bullshit creation myths, mommy make it stop!" my blood starts to boil and I get serious about implementing a method of punching people in the face over the internet.

Yeah, of course we'll be able to do genetic research into your nasty-and-probably-heritable-disease without comparing your DNA to that of other populations, probably in ways that cast doubt on your bullshit story of having been plopped down by the gods, ready made, in the Grand Canyon... No problem at all. Also, we'll definitely not have to mention that inbreeding might have occurred, after we see those stacks of homozygous alleles. Oh, of course inbreeding would never occur in your precious (and very genetically isolated) little culture, and it hurts your feelings when we mention that the genetic evidence says that it did. Cry, cry.

Listen, fuckers, science isn't some magically wish fulfillment machine "Why yes Dr. Scientist, please use your science magic to cure my diabetes...", it's just the best method we have for learning about the world. If you don't want to know, GTFO. If you want science to solve your little problems, be prepared to learn about how the world actually is.

If the researchers went beyond the scope of their subject's informed consent, fuck them.

However, if our picturesque little tribe signed up for the research, but is just getting all touchy because they don't like the results, then fuck them. Maybe next time they can ask the mythical entities that plunked them down in the Canyon to solve their medical problems for them, if the idea of having crossed the Bering Strait is just too culturally insensitive for them...

However, if our picturesque little tribe signed up for the research, but is just getting all touchy because they don't like the results, then fuck them.

About that punching people over the internet device-- I'd start with your own face. It isn't about cultural sensitivity "getting in the way of" science, nor does it even have anything at all to do with the scientific method, nor are these people challenging it, nor did they expect a "magical wish fulfillment machine" to cure their illness. This was about a very specific rule in medicine, which is do no harm.

Harm is not just physical, it can also be psychological. And in this case, by violating the terms lai

Everyone keeps saying that they violated the terms of the agreement, but from TFA, I'm not so sure that's the case. The agreement said that the blood would be used to “study the causes of behavioral/medical disorders”. Most of the research described seems to fall under that category. It was originally presented as work to help understand the high diabetes incidence in the tribe, because that was why the blood was collected in the first place, but when that work was done, they still had the DNA.

I'm torn here. On the one hand, I would not want research on tissue samples being done outside of the scope of the informed consent permissions document under which the samples were collected. If that did, indeed, occur, the researchers lied to their test subjects. That is all kinds of unethical.

And it should have been blocked by the local Institute Review Board (IRB) who is supposed to oversee research involving samples of human tissue for this very reason (shades of Tuskege and vulnerable populations come immediately to mind). Either the researchers didn't get IRB approval, which is a career-ending mistake, or the IRB gave approval for what seems to be unethical use of the samples.

Neither of those seem likely so I'm betting there's more to the story here.

For those who are interested in understanding more about regulations concerning human research, the basis for current theory and practice is something called The Belmont Report (use Google). Also, for Federally Funded research, DHHS has specific guidelines (based on The Belmont Report recommendations): http://www.hhs.gov/ohrp/irb/irb_guidebook.htm [hhs.gov]

Just because they are scientist does not mean they are angels out to do humanity good.

Take the insurance company getting hold of your DNA. All of a sudden, the next time you go to use your benefits you find a whole list of exemptions. You have the markers for cancer X? Not Covered. Heart disease, epilepsy? Not covered. You get the idea.

If you don't think that these things will happen you only have to read about Wellpoint [slashdot.org] to see if someone cancel your coverage to make a buck. Image what they would do if they had your DNA as well. They would drop you and you would never know what they found.

you have to be sensitive to people's beliefs, no matter how self-serving, hypocritical, or absurd, not because their beliefs are valid, but because otherwise the peasants rise up and burn down your lab

for all of the creationists, all if the jenny mccarthies, all of the anti-global warming corporate apologists: there is a grain not of truth in their resistance, but of atavistic reactionary distrust: "i don't understand this science stuff, and i am afraid. is it good for me? is it bad for me?"

and then, if you talk to the people, if you remain sensitive to what they want and fear, and you give them feedback and assuage their concerns, their fears subside and they grow appreciative and cooperative

but if you rain down insults and abuse and derision from your ivory tower like you do in your comment above, you will find their distrust deepens, their fear grows. and what you get is that seed of atavistic reactionary anger grows into a lynch mob: "see: the wizard in that castle is doing evil things, burn him at the stake!" and then you aren't doing science anymore, you're dead... you're research grant is defunded

so you should be sensitive to what the common man thinks and believes. ridicule him at your own folly. when he tells you his concerns, do not belittle him, patiently console him and explain to him

because if you don't you will find that your ivory tower is being tipped over by peasants with pitchforks

all you really demonstrate in your comment above is a profound lack of social intelligence and an intense insulation from the real world. work on your humility. a little grace and decency to your fellow human beings, no matter in how little regard you hold their thoughts, is all you need. but instead, to engage in the hostility you do, simply means you are arrogant and full of blind pride, hubris

I wonder what is to prevent DNA studies of large, existing "captive" databases. There could be a imperative moral reason, like a new bioweapon aimed at soldiers with the military looking at prevention. But that would be different use form what these samples were obtain for.

Supposedly police DNA is just distilled to the 30-some markers used for an ID match. And the military is discarded after the soldier is discharged. But I doubt bureaucrats always carry these out.

From the looks of the article, it seems more like a case where the people were told but didn't understand the ramifications of their decision:The consent form was purposely simple, Dr. Markow said, given that English was a second language for many Havasupai, and few of the tribe’s 650 members had graduated from high school. They were always given the opportunity to ask questions, she said, and students were also instructed to explain the project and get written and verbal consent from donors.So, were they mislead, or is this more of a type of "buyers remorse"? There are plenty of places where the local population is uneducated and unlikely to fully understand genetic testing, should we stop studying them, and in the process deny them the good (potential treatments for disease that they suffer from) to protect them from "the bad" (the possibility that their world-view will be challenged, or that the data will be applied to larger studies)?

Also, one of the big issues here seems to be that the findings contradict their folklore:Another article, suggesting that the tribe’s ancestors had crossed the frozen Bering Sea to arrive in North America, flew in the face of the tribe’s traditional stories that it had originated in the canyon and was assigned to be its guardian.Listening to the investigators, Ms. Tilousi felt a surge of anger, she recalled. But in Supai, the initial reaction was more of hurt. Though some Havasupai knew already that their ancestors most likely came from Asia, “when people tell us, ‘No, this is not where you are from,’ and your own blood says so — it is confusing to us,” Rex Tilousi said. “It hurts the elders who have been telling these stories to our grandchildren.”So science showed that their fable about springing from the ground in this canyon was, at best, unlikely. So what. We don't accept that the Earth is the center of the universe, that sex with virgins cures disease, that human sacrifice improves crop yield, or that it's turtles all the way down, why should we care about this story either. I'm not inclined to "turn off" science just because results show that a stone-age story is just a story.

Uh I'm sure we knew about the Bering Sea crossing even before this specific DNA testing. So this is like pretending that it's the first you've heard someone say something negative about you and demanding an apology, when 70 or so other unrelated people have as well and so you should be used to it by now?

Unfortunately, if they can't understand the consent form then they can't give informed consent, can they? This could be remedied by helping them to understand the consent form, which was done. However, if you purposefully mislead people, then again, they didn't give informed consent at all.

I agree, that's tricky, but ultimately it comes down to it being done in good-faith. If this was explained to the people (which seems to be the case), and if the people seemed to understand and agree at the time (which I see no evidence against), then the researchers acted in good faith. Just because they didn't foresee certain consequences (such as their creation myth being busted) doesn't mean that they did not give informed consent.

If I sign a paper before surgery that states the doctor has my permission to remove my appendix because it is infected, then I have given him informed consent. But, once in there, he can't just decide that my gall bladder, also an extraneous organ, looks like something his research students could use in their doctoral theses.

I think that's a poor example. These people signed on for broadly defined "medical/behavioral" studies. Their main interest was the diabetes study, and if that's all they were interested in giving consent for, they should have said so.

They didn't just use the DNA for something the Havasupai didn't want them to use it for. Doctoral students and other researchers effectively made a profit from the DNA which was obtained in an unethical manner.

Grad students are researchers. That's how a lot of research gets done. Who do you think would be doing this work, when it's a university who shows up at your door and says "We'd like to study your genetics"? Further, what's wrong with profiting from this research (either by gaining a degree, or monetarily)? Lets say they actually came up with a cure for diabetes during the course of the study. Are they then barred from marketing this new drug? If so, how does anyone get this treatment? Like it or not, volunteers are the basis for medical study, people profit from the results of the research, and hopefully, overall, life improves all around due to new treatments.

I live not too far from the Havasupai reservation and I have to tell you that these Indians are not playing with a full deck.

For example, they try to license the air space over the reservation, regardless of the fact that the FAA has told them many times that only the FAA may do that.

They (the Havasupai's) bend the laws to their own will and then when someone tries to go after them, they hide on their reservation where you can't serve them with any notices and even if you did, they would ignore them.

You are very misinformed. I have been to the Havasupai reservation recently. The Hualapai have the sky walk and the Havasupai do indeed live 8 miles below the rim of the Grand Canyon. "Supai" is the name of their village.

It is probably unrelated but worth knowing, that in a village of 450 people that is 8 miles from the nearest road, they have a very nice modern diabetes clinic and exercise center.

As for the first point regarding air-space, perhaps you should put yourself in their shoes for a minute. You are part of a sovereign nation, and some dudes come in over sea and take over, relegating you to a small patch of land. Eventually these conquerors (after killing most of your kind) grant you sovereign rights once again. It is up to Germany to determine what happens over German airspace, right? It is up to the FAA to determine what happens over USA airspace, still right? Now, the tribes have min

I've been to Havasupai (which is actually in Havasu Canyon, not the Grand Canyon, but they are connected). It's known locally for it's really beautiful falls (Moody, Havasu, and Beaver). If you remember the Indian village from Next [imdb.com], that's the place.

While I was waiting to get helicoptered out (you can hike ten miles, or fly, there are no roads) after my girlfriend twisted her ankle, I got to watch for three hours as the locals flew in from their shopping trips. I do not remember a single one who was not obese. Most were morbidly obese. And the crap they were getting off the helicopter was, well, crap. They subsist on a diet of Hot Pockets [youtube.com], Cheetos, and Pepsi. They don't farm, they don't work, they do all have satellite TV, though.

Morbid obesity, a high-fructose corn syrup heavy diet, and a sedentary lifestyle are all factors for an increased rate of diabetes.

The other reservations in AZ that I've visited are primarily agrarian (with a few casinos), so for the most part, they're eating healthier foods, and they're out there performing physical labor to cultivate the food. A good diet, and plenty of exercise reduce the risk of diabetes.

Meh, it all seems like another case of irrational, needless drama. Should the researchers have asked permission to use the DNA samples for other research? Probably. At the very least that would have been respectful. Nonetheless, who gives a crap if they didn't? So what, some scientists took your DNA, ran some tests, did some comparisons, and found out that, shock and awe, you are descended from other human beings just like the rest of us. Furthermore, they took a few extra steps and did some research on mental illness which may or may not have provided some beneficial medical data somehow. What's the big deal?

I mean, sure, if the DNA samples were used to catalog and track the individual members of the tribe, associate them with their facebook pages, and then all that data was sold to the government or some ad agencies or something then yeah, that would suck. If your DNA was used to genetically modify some two headed cat that went on a rampage and ate babies, then yeah, that would suck. But what is the big deal with using it for more research?

Like I said, the researchers definitely should have asked permission, but banning them from the tribe seems like overkill. At worst, this situations seems like it calls for getting miffed and then shrugging it off.

I a bit of background. My dear lady has Leukemia. A particularly nasty type. She has undergone Treatment and came through in great shape, so well that after 2 years there is no sign of it coming back. Remission is a good thing. Now I do not know if you are aware of this, but most research work on this nasty problem occurs at only a handful of major research centers. They also do the vast majority of the final diagnostic work. Anyway, Several weeks ago she had to go into the office and have a blood draw for CBC and the like. At the time the Doctor asked if she was willing to allow the Mayo Clinic have some blood for testing to see if there is a genetic reason she did so well and other do poorly. She agreed. To make a short story even shorter there was a document that needed to be signed that stated exactly what test were to be done and that any additional testing would require authorization in writing. I asked why all the paperwork. The Dr. response, " it is the right thing to do, morally and legally" So this is how it works. They have no right to do any tests other than those that were authorized and a violation would be a breaking of a legally binding contract. And remember, that is what it is, a legally binding contract.

Second year of High School there was a year long course, mandatory for graduation call "Tribal Government", except it wasn't tribal government it was a year of Lakota mythology and religion. Even though I'm not a member of the tribe, I had to take it, as did folks who weren't American Indian, the school board which was 4/5th white would not allow kids to opt out because BIA funding was dependent on it being taught. A non-tribal member could not get a grade better than B+ because "they weren't capable of understanding it fully".

In biology classes we had a day during evolution of "Lakota creation myth". Again, BIA funding mandated it.

Hm, was it at least interesting? (plus...many native mythologies and faiths have certain adequate amounts of wisdom in them; popular culture wants to convince me it is quite universally the case with North American Indians...is it?)

Most importantly, do they actually believe in old mythologies (I hear there were many new movements in response to expansion of Europeans...) or is it mostly treated as cultural / traditional thing to know?

"Based on the Native American Graves Protection and Repatriation Act (NAGPRA), five Native American groups (the Nez Perce, Umatilla, Yakama, Wanapum, and Colville) claimed the remains as theirs, to be buried by traditional means. Only the Umatilla tribe continued further court proceedings. In February 2004, the United States Court of Appeals for the Ninth Circuit ruled that a cultural link between the tribes and the skeleton was not met, allowing scientific study of the remains to continue."

Oh don't worry, we think their religious beliefs are just as irrational. The thing is, most of us don't object to people holding irrational religious beliefs. We object to them applying those beliefs to undermine human rights and retard the progress of science. Personally, I believe in an inherent human right to privacy and to control over how my genetic information is used by others. If you want to study my genes, ask permission and I may or may not grant it. That seems completely reasonable. If a christia

It's been the case for a while; not too many people in postcolonial studies are big fans of science. There's a decent amount of writing accusing scientific study of non-Western cultures of "epistemic violence", by displacing another culture's explanations with Western-science-culture's explanations.

I'm probably not the intended audience, as I'm a right-wing secular humanist. However I think the consensus among most atheists is that all religions are bullshit, regardless of the size or standing of the culture they come from. Usually the people who defend the right of smaller groups to have their ignorance unassailed are left-wing postmodern cultural relativist Christians like Unitarians. Oh snap!

Acknowledging a desire to “remedy the wrong that was done,” the university’s Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.

It takes a lot of effort sequence DNA and odds are the university hadn't actually sequenced the entirety of the DNA that was provided, but just the relevant chromosomes. Likewise, depending upon when the sequencing was done their might be errors or incomplete blocks in the sequences that modern equipment could correct for.

do you mean force it to be deleted on the grounds that the data was obtained unethically? Because that would actually be an even creepier precedent.

The research should absolutely be deleted as it was done on subjects without their consent or knowledge. The precedent set by using that research would be the total violation of privacy, as it says its alright for government institutions to use deceit to get personal information.

That you see a problem with stopping this type of action on the part of the governm

a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used

I'll say the same thing here that has occurred to me with several other decisions. It's amazing to me that there could be any controversy over this or otherwise a widespread view that there is any other way to handle it. I wouldn't even want to lend my car to someone without having an idea of what they plan to do wit

I'll say the same thing here that has occurred to me with several other decisions. It's amazing to me that there could be any controversy over this or otherwise a widespread view that there is any other way to handle it.

Remove the "genetics" aspect from the issue; let's imagine that the tribe consented to have the researchers take photographs to study, say, body morphology, or whatever. The researchers then use those photographs to also analyze facial morphology.

Should the research subjects be able to control in perpetuity how those photographs can be looked at and thought about? Should they be able to control what tools are used to examine the photographs? (i.e. eyes only, no lenses or calipers...not even eyeglasses) Or can the researcher analyze those photos as they see fit and draw whatever conclusions they wish?

Both a photograph and a DNA sample are snapshots of some aspect of a person's individuality. Both yield medical data. Both can be used to track and uniquely identify a person (except for twins). We're just far more comfortable with the concept of photographs.

If this case were about photographs, would the Slashdot crowd react in the same way, or would we dismiss the tribe as backwards aboriginals afraid of losing their soul? Informed consent is a very good policy, but does our discomfort stem from the breach of policy or the genetic bogeyman?

Should the research subjects be able to control in perpetuity how those photographs can be looked at and thought about? Should they be able to control what tools are used to examine the photographs? (i.e. eyes only, no lenses or calipers...not even eyeglasses) Or can the researcher analyze those photos as they see fit and draw whatever conclusions they wish?

That should all depend on the consent form signed, shouldn't it? If individuals want to release their data for only a certain kind of study, whether that's DNA, photographs, or shopping history, and reasears decide to do something else with that data - well, what does the consent form / privacy policy say? It's a contract, like any other (and like any other, if you misrepresent a written agreement to someone who can't understand its implications, the statements you make and not the written form becomes the contract).

I would say its no different if its a photograph. A key component of performing valid and recognized research is informed consent. I absolutely expect to control in perpetuity how my photograph / dna / etc are researched. I'm not as concerned with the tools, whether its a magnifying lens or a digital something or other; but what's being searched for is separate.

The fact that you had to use the word "also" as in "also analyze facial morphology" illustrates the line very clearly. I/you/we/whomever didn't consent to that; we consented to body morphology. If you want to analyze it for that come back and get my consent or piss off.

Why do I hold this control? because its my information to start with. I gave you access to it in return for something under some contractual terms.. Now you are trying to change them after the fact without my option or giving me anything in return. More importantly, you are trying to do something I likely would never have agreed to in the first place.

Here's a better example, instead of a photo, let's pretend its my credit card. If I go to the store and buy a widget from you and pay with my credit card, I consent to give you the credit card briefly for the sole purpose of executing this transaction. You are not entitled to copy my number, to run background checks on me, to withhold it from me, to give it to others, or to charge other things to me. I gave it to you to execute a transaction that's it.

So to answer your question I would react that exact same way. I view it no differently than fraud / misrepresentation and potentially breech of contract.

To answer a separate question; the researchers are free to draw whatever conclusions they want no matter what. Whether they are valid conclusions, or have any evidence to substantiate the claim is another story. They are free to analyze these photos in a manner which is consistent solely with advancing the purported goals and activities that are consistent with disclosure, studying for trends that are wholly unrelated to the study at hand which was disclosed does not meet this requirement.

Think about this in the reverse case. Go buy a playstation3 or an iphone, shouldn't it be yours to do with it what you will? Or does Sony/Apple have a right in perpetuity to change the conditions and terms, add and remove functionality as they see fit at any time whenever they like without your consent. Doesn't seem very different to me. You want my data you play by our rules. I'm not giving you my blood, i'm giving you a license to analyze it. Come to think of it more ironically Apple does exactly this in regards to tools now. Apple software "can only be run on apple branded computers" and iphone software can only be written in "approved languages".

Funny, its always important that IP, copyrights, contractual, and privacy rights of corporations is always protected so sternly, but so quickly trampled when they are of an individual, the ones who are actually supposed to be protected by laws.

The following is me playing devil's advocate but I think it's worthwhile.

No. DNA is not your information. It's you (at least your physicality). I still say too bad. Ownership of self is an illusion. It's the result of social convention, no more.

If an individual was determined to carry the cure for cancer in their blood and they allowed a sample to be taken for confirmation of this theory but specifically refused researchers the "right" to synthesize or reproduce/culture that sample, what do you think wo